Characteristics of Informal Caregivers and Social Participation of People With Dementia

Abstract

Background and Objectives

Social participation is associated with increased quality of life and well-being but declines following the onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities.

Research Design and Methods

This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving. NHATS respondents with possible or probable dementia and an informal caregiver were included (N = 1,060). Respondents were asked whether they participated in each of 5 social activities during the past month. Valued activities were considered somewhat or very important. Survey-weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities.

Results

Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/nonrelative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (odds ratio [OR] = 1.88, p = .016), attending religious services (OR = 4.82, p < .001), and volunteering (OR = 3.25, p = .015), whereas greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR = 1.37, p = .022).

Discussion and Implications

Assets of informal primary caregivers found to promote social participation of people with dementia include traveling to the person with dementia’s home, being socially active themselves, and utilizing support services.

Cognitive impairment, Family caregiving, Social activities